December 15, 2008
Truncal Lymphedema - A Patient's Tale
While gardening, I was bitten by a spider on the breast cancer treatment arm. I had been diagnosed and treated for Inflammatory Breast Cancer. The arm immediately swelled and I had lymphedema. After antibiotic therapy, therapeutic massage, and manual lymph drainage the symptoms seemed to disappear.
Lymphedema is swelling caused by build-up of fluid (lymph) in the soft tissues of the limbs. The lymphatic vessels no longer drain lymph fluid efficiently from the extremities, resulting in a swollen limb. This build-up often occurs after surgical removal of lymph nodes, or radiotherapy to lymph nodes (because of blockage of the lymphatic system), and sometimes after chemotherapy.1 Usually, this is apparent in the arm, which may become quite noticeably enlarged. Less frequently, it occurs in the torso, a condition called truncal lymphedema in which swelling or fullness might appear on the breast, at scar lines, over the collarbone, or elsewhere on the chest area or back.2 Swelling may also occur in the chest wall and back, also known as truncal lymphedema. 3 Patients may often develop symptoms before any objective evidence of lymphedema. These symptoms may include a feeling of fullness, tightness, or heaviness of the arm, shoulder, or chest, and an altered mobility of the shoulder. Associated with arm swelling, there may be truncal edema and an asymmetric increase in the subcutaneous fatty tissues.4
The National Cancer Institute (NCI) states, "Estimates for lymphedema incidence after breast cancer treatment range from 6 to 30 percent. But because the definitions of lymphedema and its severity vary, because many patients have never heard about lymphedema and so never seek medical help, and because tracking lymphedema through medical records is not required, experts agree the incidence is probably higher."5
Then I started puffing up whenever I flew on an airplane, took a car, bus or train trip more than an hour, or if I did not get enough sleep. I would enlarge 3-4 dress sizes and experience pain. My upper body looked like the Michelin ManTM or the Pillsbury Dough BoyTM. I had swelling over my collarbones, I looked pregnant and my abdomen was hard. There was little swelling in the lower body and the ankles stayed the same. No one seemed to think much of this problem because it would seem to resolve itself after a few days or weeks.
On November 5, 2008, I had lunch with an oncologist interested in supportive care and survivorship. I asked him about my mysterious problem. He looked at me and said, "You have lymphedema." On November 10, 2008, I went to the University of California San Francisco for a Reclast® infusion. I needed to get a blood test 3 hours before the infusion. At 12pm there was no problem finding a vein. By 3:30pm I was so swollen, finding a vein in my arm for the infusion was almost impossible, requiring two oncology nurses.
Curious, I came home and measured myself that evening. The next day for the first time I tried Lasix® -- all I got was a headache, reddish urine and no fluid reduction. Then on November 14, 2008, I saw Nancy Rakela, LAc, OMD (www.nancyrakela.com). She looked and could see how visibly swollen I was. She began treating me for truncal lymphedema by acupuncture. Michelle Bullard, LAc, MS (www.michellebullard.com) and David Stokke, LAc, MS, added additional acupuncture treatments to drain the truncal lymphedema.
On November 23, 2008, I had lost 9 inches off my middle. On November 24, 2008, I had another appointment at the UCSF Carol Franc Buck Breast Care Center. The trip to UCSF takes me over an hour by public transportation. While waiting to be seen, I measured myself. I had gained 3 inches around the middle. By the time I got home I had gained a total of 7 inches. Once again I was visibly swollen. The next day I had lost approximately 6 inches. This is the key! While I seemed thinnner, I had not lost all of the additional liquid gained. I believe over the past years the additional liquid did not disperse but continued to build.
On December 14, 2008, after several acupuncture treatments, taking ginger baths, body scrubs, massage, and using Rose Marigold Salve on my skin. The lumps over my collarbones, upper back, and arms have decreased. My middle has decreased 11 inches. I feel lighter and have more energy. It will take a few additional weeks to remove the built-up liquid but each day shows improvement.
I complained for years. The only advice - I needed to address the weight gain. But wait, my diet had not changed. I exercised daily - Tai Chi and walking 1-3 miles per day. Meanwhile the chronic swelling fluctuated with attendant pain and quality of life problems such as -- fear of a secondary cancer or recurrence, clothing to wear, bending down, fatigue, sleeping and so on.
Has anyone examined or even asked whether the weight gain experienced is possibly lymphedema which may adversely affect breast cancer survivors with short-term or long-term discomfort, chronic pain, debility and loss of function?6 What if studies about higher body weight as a cause of lymphedema are an example of the cum hoc ergo propter hoc (with this, therefore because of this) fallacy?
Addressing and being aware of the possiblity of truncal lymphedema is imperative. Complications of breast cancer therapy, Lymphedema, swelling in the soft tissues of the limbs, or less often the trunk and Post Breast Therapy Pain Syndrome (PBTPS) in particular, can result in a significantly adverse impact on quality of life (QOL) for millions of breast cancer patients. Current standard clinical management approaches are often ad hoc in nature, in the absence of well-defined and evidence-based clinical practice guidelines. Chronic symptoms associated with breast cancer therapy often lead to daily challenges at home and at work, with attendant anxiety and depression for many patients.7
- 1. Lymphedema, John P. Cooke, MD, PhD, Andrzej Szuba, MD, PhD, Alexandra Andrews, and Ernest H. Rosenbaum, MD, (CancerSupportiveCare.com/Survivor/lymphissue.html).
2. The Breast Cancer Survivor's Fitness Plan: A Doctor-Approved Workout Plan For a Strong Body and Lifesaving Results , Carolyn Kaelin, MD, PhD, Francesca Coltrera, Josie Gardiner, and Joy Prouty, McGraw-Hill: 51.
3. Voices of Lymphedema: stories, advice, and inspiration from patients and therapists, Calina Burns, Ann B. Ehrlich, and Elizabeth J. McMahon, PhD - Lymph Notes; September 1, 2007: 206.
4. Principles and Practice of Palliative Care and Supportive Oncology, Ann M. Berger, MSN, MD, John L. Shuster, MD and Jamie H. Von Roenn, MD, Lippincott Williams & Wilkins, Oct 1, 2006: 259.
5. NCI Cancer Bulletin for May 29, 2007 (HTML) - National Cancer Institute, (cancer.gov/ncicancerbulletin/NCI_Cancer_Bulletin_052907).
6. Introduction and Treatments for Lymphedema, Sabrina S. Selim, MD, Francine Manuel, RPT, Cheryl Ewing, MD, Ernest H. Rosenbaum, MD, (CancerSupportiveCare.com/lymph.php).
7. Post Breast Therapy Pain Syndrome Handout, Robert A. Wascher, MD, FACS, Ernest H. Rosenbaum, MD, Alexandra Andrews, WM, Charles M. Dollbaum,MD, PhD, Karen Ritchie, MD, Sarah Schorr, RN, BSN, Francine Manuel, RPT, Jean Chan, BA, MA, SEd, Richard Shapiro, MD, (CancerSupportiveCare.com/pbtpshandout.php).